I can’t keep up this exhausting pace as a mom, teacher, and caregiver

I am going at a pace I can’t maintain. As a former half-marathon runner, I can feel the burn in the pit of my stomach as I write this. I can feel the heat in my legs and cheeks as I push myself to the finish line. Except this time, I’m not running a race — I’m raising my family.

I’m a married mother of seven — Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3 — living in central Nebraska. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD). My role as a mom doubles as that of a caregiver.

The past 12 months have been full of activities. When people find out I have seven children, they’ll often comment on how full my hands must be. Over the years, I’ve learned to respond that yes, that’s true, but my heart is even fuller! With that in mind, please know that as I share the following information, my heart is full because of the experience.

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Spinning in mud

In the year since May 2024, the following has occurred: Max graduated from high school and moved into a local college dormitory, where he lives independently with Duchenne with the help of a team of caregivers. My oldest child got married and moved three hours away. I returned to work full time and then to college full time. (I already had a master’s degree, but my new teaching job brought me back to school to get certified in special education.) My sons with DMD participated in a clinical trial, my husband, Jason, started a new job, and my third child is about to graduate high school and transition to college five hours from home. In just two weeks, we’ll host a graduation party for him.

It was a big year, and for it to be successful, my husband and I had to give as much as we could, and then some. We are tired, and it often feels like we’re spinning our wheels in the mud.

I went back to work last fall because we needed the money. In all honesty, Duchenne is expensive, and even a good salary isn’t always enough. I love working for many reasons, but juggling work and my family’s needs is challenging. Because of my husband’s new job, I won’t have to continue working much longer. We won’t be wealthy by any means, but it will provide enough for the simple life we have carved out for ourselves.

We want to provide the least stressful life possible for our sons, and our entire family, as we navigate the difficult road that Duchenne has laid out before us. It functioned when my husband was working from home and I was teaching, because he could still take the boys to doctor appointments, stay with them when they were sick, and deal with their modified school schedules.

But after he started his new job and we were both working outside the home, it took no time to realize that the situation wasn’t feasible. So I decided to honor my work contract and finish the school year, and then call it quits on that front. But until then, I’ll admit, I won’t be making any meal plans at home. We’ll probably eat out more than we should, we’ll never get caught up on the laundry, and the boys will stress out about who will be picking them up from school and staying with them on days when they have a modified school schedule.

Honestly, it feels like we can’t do anything quite right. The staff at my school is incredibly understanding, but most days, I arrive a little late and have to leave as soon as the students do. Jason is dealing with commitments he made to our family, including a Make-A-Wish trip and a clinic appointment, which means he had to take days off of work while navigating being a new employee.

It seems impossible to do everything we need to do. We try to focus on one day at a time, but our days are overscheduled, and no one can keep up.

I’m counting the days until I can be an unemployed mom again. When that happens, my only focus will be my family. I love my job, but I love my family more. I’m thankful I’ll soon be back home, where I can have the most impact.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.